22 November 2014

"When we are no longer able to change a situation, we are challenged to change ourselves." ~Victor Frankl

Brain cancer took my quick wit, but forced me to look deep into myself and write things I couldn't speak.

Brain cancer took my ability to read novel after novel, but not my love of escaping into another person's thoughts, dreams, and trials.

Brain cancer took my stellar concentration and ability to remember all the small details, but not my love of learning.

Brain cancer took me into a fight that I was not interested in fighting, but not my determination to learn new lessons in the moment.

Brain cancer took everything and nothing all at once, but forced me to embrace changes in myself and my family that needed to be made.

Brain cancer took some of my long term dreams, but made me determined to focus more on the daily moments.

Brain cancer took my determination to do everything I could under my own power, but not the daily reminder that I need to be working under HIS power.

This list is not full of regret, but determination. I want to use this awful trial to help others in their situations. It might be as small as helping someone believe that they can complete an exercise class or as big as one day being given the opportunity to share my experiences with a large group. Most importantly I want my kids to know the me that they aren't mature enough yet to understand. I write here and I'm determined to journal privately for them. I've been praying more for the opportunity for a larger platform... I'm just not sure what that looks like, I just know it's on my heart. Pray with me and even help me find the right stage with a willing audience. I think I have finally reached a place where I can believe that my most effective ministry can come out of my deepest hurts, but that can't happen until I'm willing to be more open and available. "You yourselves are our letter, written on our hearts, known and read by everyone. You show that you are a letter from Christ, the result of our ministry, written not with ink but with the Spirit of the living God, not on tablets of stone but on tablets of human hearts." 2 Corinthians 3:2-3

I have also decided that it is time for me to adventure back into books! I saw a quote that said, "We lose ourselves in books, we find ourselves there too." Even more convicting was when I read "A reader lives a thousand lives before he dies. The man who never reads lives only one." There is really so much truth there.

First my biggest excuse was that radiation stole my short term memory. Reading novels became more work than fun because by the time I reached chapter 3, I had forgotten some of the details that I had read in the first two chapters. The night of my seizure, I had read more than 200 pages of a novel that I get frustrated trying to finish because it was book 6 of a series and I can't remember any of them! Since my brain surgery, I have read THREE books. It is embarrassing to admit that in three years I have only read three books for myself. Maybe I would feel better if I counted the Nancy Drew, Bernstein Bears, Veggie Tales... no, those are for the kids to learn this beautiful adventure into learning that is reading. Two of the books that I read were other people's stories of challenges and were both very therapeutic for me, but not an opportunity to escape from my thoughts.

Second, all of the seizure medications make concentration incredibly difficult. In the past if I was engrossed in a good book nothing could pull my attention from that paragraph. Now I find myself in a constant joke of "squirrel!" when it takes almost nothing happening around me to change what I'm doing and thinking and even more frustrating cause me to go back and repeat the last several moments again as if never happened. (If you don't get the squirrel joke, you need to watch the movie UP or this clip http://www.youtube.com/watch?v=OxYYPziLdR4!)

More recently my health has become a battle with my eyes! Apparently some of my mini seizures have forced the blood vessels in my eyes closer to the surface. When I add that issue into the fact that I really enjoy weight lifting I've had to learn to live with burst blood vessels. My right eye has had a few of these lately and I have had to make some adjustments in my exercise since I am not a fan of feeling like I have sand in the corner of my eye while that blood vessel heals. (I don't want to talk about the conversations I have with my oncologist and her nurses that always sound like "It is rare that anyone with what you have feels like doing that much") Then for the past two weeks I have had a swollen left eye with unbelievable pressure. After seeing my oncologist, an ophthalmologist, and my primary care physician it turns out I just have an ear infection and infection in the sinuses around that eye that made my eye bright red and full of pressure. I have amazing vision and until the last few months never realized how exhausting a minor eye issue can be.

Reading gives me somewhere to escape when I've had all the reality I can endure that day (and have obviously already been to my Bible and the gym!). While I do not enjoy change I am realizing that in order to get back to my love of books, I'm going to have to make some changes. I think the time has come for me to give audio books a chance.

"Progress is impossible without change, and those who cannot change their minds cannot change anything." ~George Bernard Shaw

09 August 2014

"The best journeys in life are those that answer questions you never thought to ask." ~ Rich Ridgeway. Before I left for my trip with First Descents, my amazing dentist gave me a card with that quote in it. I remember thinking... wow. I hope that is really true for me on this trip.

When I applied to go on the First Descents trip, I just knew for sure that I needed to meet other young adults that were willing to live life in spite of cancer. I needed to know that there were others that were not interested in just sitting on their couch angry about their circumstances. Their promo video made me cry. It made me realize that even though I keep trying, I'm not really living life like I was before the diagnosis. I'm weak, needy, scared, confused, angry, frustrated, lonely, and desperate for a truly "normal" life! Thankfully, I believe in a God that is real and he loves me even when my pride and overwhelming sense of entitlement get in the way!

I really had no idea how much this trip would help and impact me. Just riding in the car from the airport looking at the amazing views in Montana and listening to the others talk about what their nicknames should be started to overwhelm me. I've NEVER been anywhere alone... I've always been with a friend or family - an now, these people would not even know my real name - only a nickname! I've also never had a nickname and didn't know how to create or pick one. We drove up at the lodge and Chia, Yak, and Q all had their nicknames... I was just trying not to cry. I felt so overwhelmed knowing I was about to be doing a whole lot of new stuff and was feeling a bit guilty for leaving my family behind to do this selfish trip for me. After meeting with the doctor and nurse, my nickname evolved and I became known as "MoonShine". Suddenly, I didn't have to be anyone for anybody. I wasn't a wife, mother, daughter, sister, cousin, or friend - I wasn't even a cancer patient! I was MoonShine and I was going to learn about kayaking along with a dozen others that had never tried this and we were getting to learn from some of the best in the world. I was no longer putting the pressure on myself to chase normal for everyone around me! I was overwhelmed with relief, yet again fighting tears, and nervous about having to be alone with my thoughts.

I have to admit that I was terrified by the whole adventure experience. I wasn't scared of the water, of having to swim, or even of drowning (I actually had a scary experience during a swim in the rapids but that is another story!). Turns out my issue was one of TRUST. I had to trust others to flip my kayak back over when I managed to get myself upside down. I had to trust that if I had a seizure that they could help me. I had to trust that my slow learning and small failures and short term memory issues might be an inconvenience, but everyone had some kind of issues. I just kept having to remind myself that I was kayaking with people that are experts at this sport. Professionals that lots of people spend big money to work with out on the water and to continue to make this fun for me and minimize the risks, we also had a nurse and ER doctor kayaking right along beside us. I could not have dreamed up a safer environment to take risks and learn to live life in spite of cancer! "What could possibly go wrong?" ~PK

In our off the river time, I really enjoyed hearing every one's stories. We talked privately about diagnosis and how the cancer was found, about how it changed the people around us, about how treatment was different for everyone... many of us agreed radiation was worse than chemo. I learned about other resources for young adults with cancer. I decided I want to find a way to be more involved. I need to make sure that one less person feels alone in this diagnosis. We spent lots of time laughing at some really stupid things... have you read the directions on the toothpick box lately?

I also spent LOTS of time in the kitchen watching our amazing chefs work. Feast your eyes on just a few of the amazing meals they fed us. Everything was made with fresh, local, and organic ingredients! Just in case you have time to plan your last meal in this life, I am facebook friends with these kitchen superheros!

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When I tried to fall asleep at night, my thoughts would stream through all of the 'what ifs'. What if I can't maintain this happy normal life I have so desperately worked to rebuild for my family. What if I invest time and money in learning something new that I won't get the chance to use? What if I have to smash my safe little box where I have so carefully placed us. What if it is really okay for me to have fun and not take everything so seriously while going over all of the worst case scenarios.

I am forever thankful for my week as MoonShine. I was able to realize that since being diagnosed with cancer that I have been so incredibly busy being normal for everyone that I have managed to forget that I'm important too. I don't have to stop dreaming so that I can be realistic and cautious so that everyone around me can continue to dream. I will dream too and I have a new village of friends that also hate cancer and love life! My new FD family reminded me that we should all challenge ourselves and continue to dream.

Stitch, I will sign up for a random class to teach me something new! Yak, I will laugh more. Cookie and Cowboy, I will look into StupidCancer.org and hopefully see yall there. Choppa and Skillet, I will read more warning labels, laugh hysterically, and wonder if yall have called the 1800 number to find out what to do with your used toothpick. BlakeFish, I will play more card games. Habibi, I will try a new fitness class. Starfish, I will be more consistent (maybe!) with my blog. Doodles, I will be a better listener like you. DJ Rob, I'm going to have a dance party with my kids in my living room! Papa T, I'm going to appreciate my family, our Texas sun, and avoid COLD water. Cheerio, I will find new sports to challenge me and keep trying when I fail.

I will write a bucket list.
I will try to silence the negative what ifs by replacing them with new adventures!
I will look at the string on my left arm and remember that I have more support than I can comprehend. I will let it remind me that MoonShine has to stop being so cautious and be willing to try new things that might lead to failure, adventure, lots of laughs, and more!

I will choose to live today as a child of the King. I am loved, my eternity is secure, so I can dream. I will dream! Psm 63:4 says, I will praise you as long as I live.

"When you come to the end of your rope, tie a knot and hang on." ~ Franklin D. Roosevelt

FD staff and volunteers, thanks for throwing me a rope with a knot already tied!!!

01 June 2014

3 years. I cannot believe that it has been 3 years since the seizure that changed everything. It is amazing to me, looking back on our life these last 36 months, how God has strengthened us, humbled us, and changed us. Yet at the same time, there are instances where we I try to get through things on our my own. Which can sometimes (OK...100% of the time) lead to mistakes, heartache, hurt, and stress. We are human, we are messed up.

But most importantly...we are loved! After all I have done in my life, my Savior loves me. ME. And he loves my wife. My kids. Our families. Our friends. And sure we could be bitter and spiteful because Natalie has cancer. I know plenty in life who are. But that is not what we are called to do, to be. We are called to be "MORE THAN CONQUERORS! (Romans 8:37). To be different. And I am not perfect at doing this. In fact, far from it. It is hard. But the great thing is God takes the weak and makes them strong. He takes the small and lets them face giants. And win. I take comfort in the fact that God has surrounded us with prayer warriors. And he surrounds us with his presence on a daily basis.

So as I look back on the 3 years since the start of our new life, I thank God every day for Natalie, and for giving her the strength to move forward and to fight, even when she didn't/doesn't feel like it. For being there for our kiddos. I can't imagine my life without her, and I am amazed everyday by her fight. She is absolutely incredible. And I wish I told her that more often.

Also, I want to say thank you to our friends and family for your prayers and support.

To the organizations we have found since the diagnosis, thank you! Brain Power 5K and the Run for the Rose for allowing us take part in your fund raisers and be encouraged when surrounded by other survivors with their support systems.Gregg Pearson Foundation for your friendship and spiritual support team.
Also the newest organization First Descents that will take Natalie for a week long adventure trip this July and help her remember to live life beyond the diagnosis.

But most importantly, I want to say thank you Jesus, for standing by us, and protecting us. For lighting the dark path, and leading us to where we are today. May we never stray from this path.

God meets us where we are, and when bad things happen, can help bring us out of despair. Pain and hurt will still happen, but there can still be joy in the midst of pain. Though we are fighting cancer, we are truly blessed and thankful.

16 April 2014

If this blog is the only way you are following our family, my cancer story, and getting prayer requests, then I'm sorry that I am not updating. I value your prayers and comments but you should probably send me a friend request on Facebook. I have had so much that I wanted to sit down and post but other things take priority and then it always seems outdated to go back and post it. For example, at this point I can guarantee that I won't be posting a 2013 year in review Christmas letter. Maybe I should start on this years in order to finish it by December! *This post is about as raw and real as I get. I will probably sleep great tonight now that I've shared so please don't let this cause you to miss getting your rest! Thank you for your prayers and for allowing God to use you in my life when I needed you most.

If you are taking the time to read this, then I want to ask you, "Will you keep watch with me?"

Each time I read the story of Jesus' death and resurrection, He teaches me something new. This year so much has touched me, but the main theme beyond His sacrifice and defeat of death has been the people in Jesus' life. His family and friends that had to deal with his death. I know they wanted more time with him on earth. When Jesus knew His death was approaching, He went to spend time alone in prayer, but first he said to his closest friends, "Sit here while I go over there and pray. My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me." (Matthew 26:36-38)

Overall I have been well, but this week has been hard. This time last week a blood vessel burst in my right eye. My brain tumor is on the right side so my imagination is amazing when it comes to all the horrible things that could be going on inside my skull. Also, this burst blood vessel is like having an eyelash stuck in your eye for a solid week. Reading, writing, driving, watching tv, and even rolling my eyes seems more difficult than it should be and when all that is put together into a regular day I am exhausted just trying to be normal. Don't forget that my imagination is still working overtime so even with much prayer I have not had enough rest. I am exhausted. I know that none of life is easy and I try to be hesitant to complain or even post prayer requests (just trust me that I do filter LOTS), because I can simply look around me and am reminded that I should just be grateful. I can take the time and pray for children dealing with the same cancer as me and that puts everything back into perspective. Keep watch with me.

As I consider worst case scenarios, it makes me be more productive when it comes to the journals I am working on for Kirstyn and James, but at the same time some very real loneliness is amplified in my life. I have lots of days that I want to share my fears, but don't want to burden anyone. I have lots of friends, but no one really close. (Maybe some of the close friendships I see around me aren't any closer than people are to me, but just appear that way?) I know that is mostly my fault, but sometimes I long for someone close that just gets me. I have noticed that as I need people, God just puts them into my life for the first time or back into my life after years apart in different seasons of life. I can go back and list a need and see the person God put there to meet that need. Even last week when I mentioned being worried the tumor caused this blood vessel in my eye to a friend, she mentioned to me that she has the same fears creep up when she gets a headache. She even said when she mentions it to others they just don't get it and she's assured she is overreacting. Again, it seemed silly how alone I had been feeling because I'm not alone in those fears and God put her there for me to hear that. She was just in time to keep watch with me.

I follow several brain cancer research sites and I read a statistic a few weeks ago that I have read before, but it hit me harder (everything is louder when I'm exhausted... I know): Only 30% of people diagnosed with brain cancer live more than 5 years past diagnosis. I am almost to 3 years. Basic math tells me that the odds are not in my favor. A 70% chance that I have less than 800 days to teach my babies and love my family. Yes, I really do think like this (I used to like statistics!!!), but I don't dwell on it... I have laundry to do, dinner to cook, kids to taxi, and even a blog to write (ha!). When I mention things like this, the people around me usually reassure me and we move on... I guess sometimes I just wish someone would panic with me. It isn't always easy to just be reassured and move on with day to day things. In the Bible studies I have been doing, I have been reminded that my eternal life started the day that I asked Jesus to be my Lord and I should live like that. Psalm 118:17 says, "I will not die but live, and will proclaim what the Lord has done." Keep watch with me.

I went to the movies this week with another good friend of mine and we saw 'God's Not Dead'. We thought it would be a good faith building "break" from our day to day stresses. (We were wrong... God has a sense of humor.) If you haven't seen it yet, you should go. There were many people in the movie dealing with difficult relationships, aging parents, and even cancer, but my biggest and most real fear was the main character of the movie. The man that wanted to push his belief that there was no God was raised in a Christian home but had become that person because of what he had experienced as a child. He had watched his mother die from cancer when he was only 12. He refused to believe that even with all of his prayers of pleas for her life that a good God could ignore him and kill her with such an awful cancer death. I found myself wondering, if his mom believed so strongly in God and her son knew that, then where were her friends after she died to tell those faith stories to her doubting and angry son. I wonder who will pull my babies out of that pit of bitterness and hate if they fall in when they have to watch this brain cancer kill me. Keep watch with me.

When I am lonely, I know this: Jesus was far lonelier than I will ever be and endured it so that we could know Him. In Matthew 26:36-38, Jesus reached out to his closest friends to keep watch and pray for him but they too were tired. They were also confused and probably didn't understand just how little time they had left with him... I like that he wasn't aggressive or needy or dramatic. Jesus just simply said to his closest friends, "Stay here and keep watch with me."